Tag Archives: cancer

Why?

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September is Prostate Cancer Awareness Month. I guess every disease has gotta have its month. I think of it more as a day to day disease. But that is just me.

I thought about talking about the statistics of this disease such as a man dies every 18 minutes in the United States from prostate cancer. That it is the most common diagnosed cancer in men and the second biggest killer.

I thought about writing about the pros and cons of having a PSA test and at what age. That is a question constantly being debated. The medical community really has not come to a consensus. It is a discussion you definitely need to have with your doctor around the age of 50 and possibly tested then or at least by the age of 55. Now if you have a family history that is a different story. Testing then should be much sooner.

I guess that I should put in here that I am not a doctor. You should seek competent medical advice. Good luck finding that.

The above topics need to be discussed. Just not by me. They are boring and you can read all about prostate cancer on the internet. I have. Just stick to legitimate web sites. Of course if you want alternative treatments they are out there. One person told me that I need to drink hydrogen peroxide. Excuse me, I think not. For now I will stick to the regular stuff that kills you. Bartender, give me a tall glass of chemo along with a shot of Lupron please.

So what do I want to talk about? Well me of course. I like talking about me. So here we go.

Eisenhower was president and he wanted to conduct a new census so my parents made the journey to their homeland in Mexico. No, no, no I was not born in a barn but rather in Audrain County Hospital in Mexico, MO. I do not know anything about a census going on just thought I would throw that in there. Eisenhower was president when I was born. I like Ike.

I do get a lot of mileage about telling people here in the Land of Oz that I was born in Mexico. I even show them by green Barnes & Noble Card. I do get around to telling them Mexico, MO. Many people around here think I am Hispanic. I have been in so many homes where the people will look at me and start talking to me in Spanish. They eventually figure it out.

So why did I just waste valuable space and talk about really nothing related to cancer? I am stalling I guess. You see what I am going to share with you is very personal and hurts. I will talk about my family and some of you know them. More specifically I am going to talk about my father.

One thing you need to know about prostate cancer is that it is one of those hereditary cancers. Most men who get the disease do not have a family history, but if you have a close family member who has the disease then your risk of getting the cancer is greater than someone without a family history. The more family members with the disease, then the higher the risk you have of getting the disease.

If you have a family history you need to start getting tested at age 40.

African Americans suffer from this disease at a higher rate than white males. Men of color should be checked at age 40 even without a family history of the disease. Please talk to your doctor.

When I started this blog in a way I knew that I would be opening up myself to family, friends, and strangers. That is something I was not sure I could do. It has been easier than I thought, and most of the time I feel better after writing. In writing you do not have that personal interaction that makes you think twice about what you are going to say. So most of the time I just say what I think and feel, and of course try to throw in a little humor from time to time. I need to laugh. I am not sure there will be much more laughing during this conversation. I will try.

I do feel like I am actually talking to you and not writing. Funny isn’t it. Of course I picture you on the couch in your lingerie while we have this discussion. Hey this is my blog and I can have those fantasies. I have that visual because most of my readers are women. Or at least it seems that way since I am most often contacted by women who have read the posts. Some of the people who have contacted me are going through cancer themselves or they have a loved one who is dealing with cancer or they have lost someone to cancer. I hate cancer! They are kind and tell me that I have helped them. That makes me happy.

Some people contact me by email after the essays, and others comment on the Facebook link. I am going to ask that you do not comment on this essay. Just read. I think that you will understand why I ask that as we talk.

Years ago I was visiting my grandfather at his residence in Columbia. My grandparents had moved there after selling the farm near Mexico to be closer to quality medical care.

On this visit my grandfather started giving me things. He started giving me household items like he no longer needed them. I did not understand why he was doing that. I did not need or want these things. He did give me some old pictures of when I was growing up and spending time on the farm. I do love those.

During this visit he said out of the blue that he would not give five cents for his life on this earth. He hoped that Heaven would be better.

I did not understood what he meant by that or why he was saying that. In my mind he had a good life. I did not ask questions. Things were getting weird and I just wanted to leave.

I want to take a short time out from this cancer talk for just a moment to comment on my grandfather’s farm. I want the people to know who live there now that I get sick every time I drive by and see what has happened to the property. If you do not clean up that place and put some paint on the house that my grandfather built I will one day stop and pull up into that long drive. When I get out of my car I am going to bitch slap somebody. You have been warned. Thank you for letting me vent. I feel better.

Now I want to get back to my grandfather. That day that he got all weird on me was the last time I ever saw him. He died a few months later. He looked good when I saw him. I suspect he knew that we might not see each other again. That I believe was why he was acting the way he was. That is why he said what he said. I did not even find out that he had died until several months after his death. My father never told me.

I learned that he had cancer. I do not know if that was what killed him or not.   I did not know what type of cancer he had. My father never talked to me about my grandfather’s illness. Hell we rarely ever talked.

Now I need to explain a little about my father. If I told you that we were not close that would be a major understatement. I would say that we did not like one another. He was not what I would call a good person. I will explain, but I do not want to turn this into a bash dad essay. It might turn into that.

I grew up in a violent home. My father was a physically abusive person.  Not every day, but when it happened, it happened big. You walked on egg shells trying not to piss him off. When he drank it was much worse.

When I was a child he was either hitting on me, my brother, or mother, but as I got older I was hit less often. At times I could stop my mom and brother from getting hit. I did not like the man as a person or as a father. I did learn a little about being a father from him. I have asked myself what my dad would do in situations I found myself needing to handle. Once I answer that question I just do the opposite. It has served me well.

I moved out in August of 1978 to go to college. I never lived with my parents again. My brother told me that things got worse after I moved out. They eventually divorced. Thank God.

You wonder why am I telling you all this. I really do not know. I guess my therapy. I wish I had a relationship with my father. I wish he was different. I have so envied friends who have good relationships with their fathers. I never could pick up the phone and talk to him and tell him about the kids or seek his advice.

I guess I am telling you this because of what I am going to tell you now. It is kind of like background information for the finale.

In February of 2012 I got a call from my mother that dad was dying. He had cancer and he did not have much time left, and if I wanted to see him before he died I needed to get there. I was not sure I wanted to go. I decided to go because I had things that needed to be said.

When I arrived he was in a drug induced comma due to the pain from his cancer. He could not talk and if I had been told that I probably would not have gone. Since I was there I decided that what I needed to say was still going to be said. Not sure in his comatose state that he understood anything I was saying, but he might have.

So I sat in a chair next to his bed and talked to him. I am sure I said some mean things. I am also sure that I told him that I wished things were different. It hit me hard that we would never be able to reconcile our relationship. That made me sad. It hit me that I loved him. I told him that. I am sure we had some good times. I just cannot remember them.

All food and water had been taken from him. He was going to die soon, but I was told that he could linger for days. The next day I left. When I got home I got word that he had died.

Cancer most likely killed my grandfather years earlier. I did not know what kind of cancer. Cancer killed my father, but I really did not know what type of cancer.

My father had chemo and his white and red cells were all messed up. His mother my grandmother had died from leukemia. I thought that he also must have had a blood cancer of some type. No one told me different. His third wife did not tell me. This was the first time I met her. I never met his second wife.

A few years before my dad died I started having symptoms of cancer. It was 2009, but I did not realize that what was happening was cancer. I did not know nor did my doctor think that I had cancer. When I told my primary care doctor of my problems he gave me pills. That little blue pill and it worked wonders. I was happy. But as a man in his late 40’s should I really need that medicine? Were we treating symptoms of a disease that we had not identified?

When I was in my late thirties I had my first spinal fusion surgery. I had a herniated disc in my upper back/neck area that was fused. I was told that I had degenerative disc disease. I was told that in the future I would need more surgeries.

My neck started acting up again, and I was able to control the pain with shots. I had a pain management doctor and for years I was given epidural steroid injections. Eventually they stopped working and surgery became my only option.

During this time I was also experience some urination problems. Since I was seeing doctors all the time I decided to bring up my problem. I again had a talk with my GP and more medicine was given. He asked me if I had a history of prostate cancer in my family. I told him not that I knew. He told me that I was too young for prostate cancer, and I did not have all the symptoms. I was not tested.

If you research the symptoms for prostate cancer I had most of them, but because of my age and no family history I was not tested. People my age he seemed to think did not get prostate cancer. Boy was he wrong.

I thought about all this and realized that I really did not know what kind of cancer my grandfather or my father had. I started doing some checking and asking questions. What I learned was that they both had prostate cancer.

When I was back to see my doctor I let his PA know about my family history of prostate cancer. I was tested right then. The PSA was high and my PC doctor told me that with that number I had cancer. He sent me to see an urologist Dr. Richard Little. I think I have talked about Dick before.

When I first met Dick he did not think I needed surgery. We could watch and wait. I was also trying to avoid neck surgery.

I was able to put them both off for a year. The pain in my neck and back finally got so bad that something had to be done.

Also my PSA numbers had a dramatic increase in a short time. I could no longer avoid surgery. When I got a second opinion I learned that the cancer threat was much greater than we had thought. Damn Dick.

So I had neck surgery in August of 2016. They fused C4, C5, C6, and C7. Two titanium plates were placed in my neck and I am not sure how many screws. Neck and back are much better now. Have lost range of motion, but who cares.

So after my neck surgery in August I had cancer surgery in December of 2016. That started the process we are currently trying to deal with. How long will this go on? Who knows?

When I am sitting by myself and I am trying to figure things out I realize that what has happened to me did not have to happen. No it did not. That brings us to the title of this essay and the million dollar question. Why?

I realize that men from my father’s and grandfather’s generation did not talk about their problems. They want to keep things private. I would imagine that many families have relatives that have medical conditions that they really do not understand, because the person with the problem does not want to talk about it.

Men tend to suffer in silence. They do not want to talk about prostate cancer. They do not want to tell people they have prostate cancer. They do not want to talk about what the disease has done to them.

Even knowing that I do think that most men would tell their children, “Hey get checked.”

Why didn’t my dad tell me that he had prostate cancer? Why did he not tell me to get checked?

The disease is hereditary. You can get it without a family history of the disease, but if you have a history you are more likely to get it. I am sure my dad had the disease for several years before he died.

If I had been told earlier, like when my father suspected that he had the disease or even when my grandfather died, to get checked then my disease, I feel, would have been found at stage I or stage II. I could have been cured. I would have been cured. Why?

It is hard for me to accept that my father kept information from me that would have dramatically change things. Again, what I am going through did not have to be.

Christy wants to think that maybe he did not understand how important it was for my brother and I to know about his disease. I do not believe that for a minute. His father had the disease. He knew.

I learned that he had commented before he was diagnosed that he knew from his symptoms and from his father’s experience that he had the cancer. He waited too long to be checked.

I do know that the history of prostate cancer killing men in my family will end. I will not allow this to happen to my son.

He will be checked at age 40. A baseline PSA will be determined and his numbers will be checked every year. If or when the disease hits him he will be ready. This will not take his life.

What my father has done to me by withholding that information is unforgivable. But I have had to move on. Hate will consume you and destroy you. You have to let it go.

I have accepted what has happened. I have not accepted what is going to happen.

I cannot let what has happened consume me. I cannot worry about the future. I have to live in this moment and make it the best that I can.

I was going to get this disease. That most likely could not have been prevented. It was in my genes. What could have been prevented would have been the severity of my disease once it was identified and diagnosed. If I had been anticipating it, and looking for it we would have found it much sooner. I would not be in my current situation. This did not have to happen.

I am finishing this essay on Friday night the 14th. Earlier today I had a discussion over the phone with a nurse from Dr. U’s office. She had the results from my latest tests. This week was the start of my once again every three months appointments with Dr. U and Dr. O. I see Dr. U next week.

She gave me the numbers. They were not good. I guess they could have been worse. You see I am looking for the positive.

Since I am off drugs these test results were going to be very important to me. If your PSA number doubles in three months or less that is very bad. I understand that is a sign that you have metastatic disease, and that it is spreading.

It has been three months since my last test. My PSA has gone up six fold in those three months.

Ruh-roh Kev. Yes Winston that is not good.

I feel as though my father gave me a death sentence. Each treatment protocol I try is like a temporary stay of execution. I live with the fear that my executioner will have his day.

If there is an afterlife and I again see my father I would like one question answered:

Why?

How’s Your Cancer?

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I was stopped at a red light not long ago and a car pulled up next to me. I saw that the passenger side window was coming down and I glanced over and saw my friend Boomer behind the wheel. We had worked together in investigations, but since his retirement a few years ago we have lost contact.

We exchanged greetings and he asked how I was doing. I told him fine. I had no idea what Boomer knew about my situation since we have not talked. The light was going to change soon and he was turning left and I was going straight. Our brief encounter would soon be over. This I suspect caused Boomer to get more to the point with his next question. He told me that he has been following my blog. He then asked, or a better description would be he yelled: “How is your cancer?”

He caught me off guard for a moment. Few people are that direct. I liked it. No sense beating around the bush. Let’s get to the point.

I told him that I was good, and that cancer thing was good. Brutus and I thanked him for asking.

The light changed and I told him that I would post an update soon. That was several weeks ago.

Before I go into more detail let me apologize for not posting sooner. I have been busy this summer. Work, the garden, dance, music, and travel have taken up most of my time.

I also have to admit that I really did not want to talk about it. I have enjoyed my summer and did not want to think or talk about cancer. Now is the time to again have a conversation about what has happened and what the future looks like. As I have said before, writing this blog is in a way therapy for me. It forces me to logically organize my thoughts. It helps me make decisions. When I write it makes me face reality. These summer months I have not wanted to face reality. I wanted to run, jump, and play. Reality sucks! Also things have not gone as I had planned. That seems to be a recurring theme.

Now we are getting closer to my next round of tests which should provide feedback on the choices I have made and will have a big impact on the decisions I must make going forward. These conversations even if the conversation is just with me help. As I write my way through a problem I am better able to make decisions.

Sometimes I do not understand what is happening. Sometimes my medical team does not understand what is happening. I have to remember that they are practicing medicine. It is frustrating when so much is on the line. So much is at stake.

Each person’s cancer is different which is why it is so difficult to treat. Each person faces this monster in a way that is right for them. Who is to say who is right and who is wrong?

I have learned in the cancer world that many problems are not yet understood. No one will ever be able to answer all questions or understand why something is or is not happening. Sometimes doctors do not agree. I have learned to move on and stop banging my head against the cancer wall. The answers will come some day. But for now it is what it is.

The results from my surgery on May 22nd really did not help in explaining what was happening, and tests that were completed after the surgery in June were not good. I went into the June test feeling really good. Most of this summer I have felt better than I have in years, I am happy.

Since I have been feeling so good that also means that Brutus was enjoying his days. You see when I felt bad from the poisons that they gave me Brutus also felt bad. Parts of him were killed and the other cancer cells had gone dormant. He was beaten down pretty good for awhile, but so was I. I would rather never feel that way again. The test results in June showed that Brutus is starting to grow stronger. Damn.

I have gotten a little out of a logical order on what has happened the last few months so let’s go back to my last post and make some sense out of this chaos. I left you hanging last time. Let’s fix that.

Let me go back to when I arrived home from my fishing trip in Colorado and the next day, May 22nd, I was to have surgery. I will start there.

It was the night before my surgery and all through the house not a creature was stirring not even a …..wait a minute that sounds a little familiar.   Anyway a mouse might not have been up, but I sure was. I could not sleep and I was up almost all night. I had a lot on my mind. I went to bed around 2:30, but still could not sleep. I got up at 4:30 to go to the hospital. I guess I really did not need the sleep. I was going to be sleeping all day after surgery.

Lying in bed I was thinking about how long I was going to have to stay in the hospital. I was hoping to go home the same day as surgery. The doctor’s staff thought that might be possible, but I was more likely going to be staying at least one night.

I was also thinking about how I got myself into this position? I really did not want the surgery. Dr. O wanted me to have the surgery. Christy thinks that I should listen to Dr. O.

I was trying to figure out how to turn this into a positive. I said to myself: Kevin, I call myself Kevin when talking to myself. I tried Mr. Brown, but that does not sound right. Kevin, you have got to figure a way to use this to your advantage.

I decided that I could play the surgery card when discussing future drugs they wanted me to take. Yup, that is what I decided. I will be the farmer’s pig one more time to avoid having to take drugs. I am going to tell them that I did your surgery thing when I did not want to have surgery. Now you want me on drugs and I do not want them. So now we are going to do what I want. We will see how that goes.

So we get to the hospital and they are prepping me and a male nurse is there to shave my chest. He sees the surgery scar from the last time, and we talk about the last surgery. While talking the anesthesiologist (had to look up how to spell that) shows up. Yes, the same one from my rib surgery in March.

He wants to know why I was there again. I had to explain that my medical team, Curly, Moe, and Larry did not have the answers they needed. They needed evidence so today I was having another rib removed. I could have said something funny to him like hoping I make out like Adam, and wake up with an Eve, but at my age I do not need that drama.

My surgeon then showed up and Dr. S spoke to Dr. A. Typing Dr. A is so much easier than typing anesthes….you know.

They were a little lazy at the last surgery prep. They only shaved my chest on the side where they were cutting me open. I looked a little funny. I asked the man to shave the entire chest area this time. I told him that I did not want to look weird for swim suit season. He laughed then shaved not only my chest, but my stomach area as well. Good job.

While shaving he wanted to know my name. I told him Kevin Brown. He wanted to know my middle name. If I had been thinking I would have said “MF.” I did not say that. Not on the top of my game, probably from lack of sleep. I told him my real middle name. I never tell anyone my middle name. The name comes in handy for one reason only. There are thousands of Kevin Brown’s in this world. I can assure you that none of them have my middle name, and no I am not going to tell you what it is. If you are buying the beer I might tell you.

Anyway I told the nurse. I then told him that if he ever told anyone else that I would have to kill him. I don’t think he thought I was serious. He could make my list.

So I get wheeled into the operating room and Dr. A wants my name. I tell him Kevin Brown. I hear the nurse yell out, “His middle name is ****, and if you tell anyone he is gonna kill you.” I laughed. That is the last thing I remember until waking up in the cardio thoracic intensive care unit. I had never heard of such a thing. I was there I guess because I had thoracic surgery, and something about a partial lung collapsing. Hell I do not know. I have never fully understood why I was in the ICU, but I liked it there.

I have never been in intensive care before. They take really good care of you there. The only problem was people constantly in the room ever few hours all night long. I had to have pills ever few hours. They gave me breathing treatments every four hours. I could not get up and walk around without being hooked up to an oxygen tank and wheeling that around with me. But anytime I needed someone they were there. Hell they were there in my room even when I didn’t need them.

After about a day and a half I was moved to a regular room. I still had to be on oxygen. It was a big difference on a regular floor. Hell I could not get anyone to do anything. I waited over an hour for some water. I got up with my tank and walked way down the hall got the water and made sure I walked past the nurse’s station. They asked if I needed anything. I told them I could have used the water an hour ago when I asked for it.

I have another bitch as well. When I was in intensive care the nurses made sure I got ice cream. It was great. I go to the regular floor and I tried to order ice cream and I was told that had to be approved by my doctor, because it was not heart healthy. Well fuck that!! Hell I have stage IV cancer a little heart attack does not scare me. I would welcome a heart attack as long as it takes me quick. Sure as shit beats dying from cancer. I guess dead is dead. I still plan on being shot by a jealous husband. Anyway after making a complaint to the Geneva Convention I got my ice cream. It was not as good as what I got in intensive care. Damn.

So I get sent home and what I thought would be at the most a week off from work is now going to be longer. Someone was sent to my house to place a big oxygen pump in my basement. A very long tube was connected to the pump. It could reach anywhere in the house. They told me that I had to be hooked up to the oxygen machine at all times. I could not even sleep without it. I had this little gadget that I would put on my finger and it would tell me how my lung was doing.

After I got home I took a shower and I started getting dizzy and feeling weak in the shower. I realized that I had taken that damn oxygen tube off. So I grabbed it off the counter and put it on. Then felt better. They were serious about that oxygen shit. Imagine that.

After about a week my lung had recovered and I no longer needed the oxygen. I had all of these tanks around the house, and I was supposed to take one with me if I left home. Finally I got the company to come get them. They looked like missiles. I thought that I was going to blow the house up.

So let’s move on to the test result from my rib. Once again Christy knows and works with everyone in the pathology department. The guy in charge again looked at the rib as well as another doctor that Christy likes, a different doctor from the last time.

No cancer was found. Which you would think is good news. I took it as good news. But that brings up the question of what the hell was it? The pathologist could see the damage. Last time the surgeon saw the damage, but he had tore up the rib so badly that the pathologist could only check for the presence of cancer cells. They could not see the damage that the surgeon had found. This time the pathologist could see the damage. The doctor told Christy that it looked like cancer could have caused the damage, but no cells.

I will take that, because my thinking was that I now have a better case for going off all drugs. If the rib had tested positive then that was not going to happen.

So the first doctor I see during “Kevin’s Summer Tour of Medical Bullshit” is the surgeon. He says “You know that the test for cancer was negative, correct?” He knows that I have the hook up. I tell him that I did know that.

He is sitting on a stool just a few feet from me and he was looking straight at me. He then looks down to the floor and his shoulders droop. He then looks up at me again and I can see in his eyes and in his face that he feels that he has failed me.

He has believed from day one that the cancer had moved into my ribs. He tells me again that what he saw was cancer damage. I told him that I understood the situation. He again looks away from me. Then there was silence. We both knew that something bad had been going on or was going on inside my body. It was just not yet understood.

When he again looked at me the cancer conversation was over. We knew that there was no reason to continue talking about it. We then talked about how to put the medicine he was giving me onto the incisions to keep germs out. He showed me how to keep it covered so I could go on my upcoming lake vacation. He said lake water better not get into the wound.

Christy works closely with many of the cancer doctors at her hospital. She has worked with my surgeon on several occasions. Therefore that makes me part of the hospital family so to speak. Dr. S believes the cancer has spread and without evidence he feels that I will not be treated correctly. I understand that.

I want Dr. S to know that I greatly appreciate all his efforts. Even though there were times we did not see eye to eye I greatly respect him. Sometimes things are a mystery. At least until they are not. Time will tell.

So the next doctor I see is my oncologist. First thing that Dr. O does is thank me for having the surgery. He tells me that it was needed to help answer questions. I am thinking well what questions did it answer? I did not ask. You see I really have gotten to the point where I do not care anymore. I just want to move on.

Several months ago I was in a bad way.   I was in his office and I was not happy with how things were going and I raised my voice a little to let him know my dissatisfaction. He made a statement that I will not forget. He said, “My job is to help you manage your cancer. I have not been doing a very good job.” I thought to myself, no shit Sherlock as I was walking out the door. I did not say it out loud. I wish I had.

The words he used that day have meaning. He did not say that he was there to cure me. He did not say that he was there to help me have a high quality of life. He was there to help me manage. If he was there only to help then that must mean that I am in charge and I was going to make a decision that he was not going to like. No more surgeries and no more drugs.

It was not a popular decision. The biggest reason being the tests that I had a week before seeing Dr. O showed that my cancer was no longer dormant, and that Brutus was alive and well and growing. Being dormant did not last very long. That is very bad. Damn.

We had this discussion in March. He kept giving me reason why I needed to continue the drugs and never come off of them. I just kept telling him no. I will talk more about my reasons on my next post.

During the March meeting we had a very good discussion and I never raised my voice. Honest. He finally understood that I was done for now with the poison being injected into my body and taking pills.

Now I am not suicidal, at least not yet. I know that at some point I will need to be back on the drugs. I know that if I am not on the drugs that the cancer will kill me sooner. I just want for as long as possible to not feel sick. You have to recover from the disease then you have to recover from the treatments.

Christy was not at that appointment in March, but she was at this one. I was concerned that they were both going to gang up on me about the drugs. You see Christy does not like my decision about coming off the drugs.

She had gone to the kids and spoke to them in an attempt to get them on her side. I knew that was going to happen. I had this planned out for months. I spoke to each of my children in person before she got to them and told them what I was planning on doing, and why I was doing it. The kids understand why I am making this choice, and for now they support my decision.

Christy let Dr. O know that she felt that I should stay on the drugs. I thought oh boy here we go. The doctor has an ally and he is going to run with it. I was pleasantly surprised that did not happen. He knows my wishes and he did not throw me under the bus.

He looked at Christy and told her that I did not want them. That ended the conversation about the shots and drugs. I will remain off all medications for now.

He did tell me that he was concerned about my rising PSA numbers and that he did not want that number getting very high. He gave me a number that he felt my PSA should not be allowed to rise above. I thought that number is way too low, and I am going to be at that number in no time. There is no way I am going to agree to that, but I did not say anything. That will be a discussion for another day. I have already started planning for that day.

So from what I can tell Dr. O still does not have the evidence he needs to prove to him that the cancer was or is in my ribs or will return to my ribs. Whatever, it is what it is. I will deal with future problems when and if they occur. He wants me on drugs, but for now he will let me think that I am in charge.

I am scheduled to be tested and maybe scanned in September and October. We will see what happens then.

For now the cancer grows and I understand the risk I am taking. I will have more about the drug issues and the cancer growth in the next post.

The last doctor I saw was the wise old urologist, Dr. U. He had told me during our last visit that he believed the cancer had spread into my ribs. Last time we talked about the need for the second surgery. He told me that they would not find anything. When I saw him in June he did not know that I had agreed to have the second rib surgery.

You see my doctors do share information such as lab work and who knows what else. Unfortunately they do not talk. I wish they did.

When he found out that I had the second surgery he was a little upset. He flat out told me that I did not need the other doctors. He said that he alone could take care of me.

I let him know that I appreciated his concern, but for now I was going to keep things the way they were.

With multiple doctors I am able to learn about more options. I am then able to cherry pick from each doctor. Dr. U has a much higher PSA number in mind when he talks risk tolerance than Dr. O’s. I like that, because I think that it at least lets me know that I am not being totally irresponsible. That a well respected doctor agrees with me on how I want to handle my treatments.

But I cannot ignore Dr. O’s thinking on what needs to be done. He is a very smart man. You may have seen on the news or read in the paper the past few months about a new study involving breast cancer patients in which it was determined that women with the most common form of early stage breast cancer could safely skip chemotherapy. Well Dr. O was one of the researchers and is a co-author of the study. I think I will keep him on my team.

Going forward from here I am concerned that my numbers are going up. That should not be happening. I am concerned that very recently I have again started having discomfort in my ribs. I have tried to tell myself that the discomfort is caused by having been so active this summer. I know that I am lying to myself.

Overall I am happy. I have had a great summer, and I hope you have as well.

Well that is my update on how Brutus is for now.

We will see what tomorrow brings. Remember life is what you make it.

Thanks for listening. Okay, technically reading.

Kevin

Every One Is Right

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So Wednesday night I am home from the hospital wondering when the results of the biopsy/autopsy of my rib will be available. I have an appointment with the surgeon on Monday to learn the results. But do I really have to wait until Monday for the results? I think not.

Christy knows everyone in the pathology department. She will know Thursday which doctor will be assigned to examine my rib. She knows the head of the pathology department and has his personal cell phone number. I think we will know before the surgeon even knows.

The head of the pathology contacts Christy on Thursday. He tells her that the specimen was examined by one of his doctors and no cancer was found. He also examined the rib and found no cancer.

The doctor told Christy they had one more test to run and they would not know the results until Friday. Friday they told her that all tests were complete and no cancer was found. Yahoo!!!

I said, “So much for the cancer surgeon being so confident that my cancer had spread.”

This was great news. I was cautiously optimistic with the results. I am always concerned about what else could go wrong. It just seemed too good to be true with all the pain and discomfort I had been having. I was waiting for the other shoe to drop.

This time though I was convinced that was not going to happen. I had two pathologists saying they found no cancer. What more did I need?

With the pathology information and many people waiting to hear about the results I posted on Facebook that the tests were completed and Brutus was not found.

It turns out that I was a little premature in my announcement.

We went to KC to see the kids that weekend and had a good time. Except for the trip to Lawrence to watch KU play Villanova, that was not good.

So we get back into town and we have a meeting with the surgeon on Monday to go over the test results. I told Christy to pay attention to who the doctor spoke to while we were there. She did not agree that he had ignored me on our last visit. I told her to just watch.

So once there to meet with the doctor it was just the three of us in the room. No other white coats today. Once again he directed his conversation toward Christy. I found a cosmo something or other to read. I was listening to their conversation.

He spoke about the pathology report and that it was negative for cancer. He showed Christy the report. He did not show me. I was taking a survey I found in cosmo.

Christy told him that she had talked to the pathologist last week about the results. We were happy.

This is when the other shoe dropped or I should say a steel toed boot kicking me in the ass.

The doctor announced that he did not agree with the report. He said that lots of mistakes can be made through the process.

He explained that what he had seen during the operation was bone that had been damaged from cancer. He did not understand why it was not showing up on the other tests. He is a cancer surgeon and he knows cancer when he sees it.

Christy leaned forward and told him that maybe he was the person making the mistake.

Boooyyy things just got interesting. Christy was coming out swinging. She had the doctor backpedaling. She hit him with a right and then a left. She then threw in a hook to the body and an upper cut to the jaw. The doctor was trying to do the famous rope a dope, but it was not working.

The doctor looked at me and tried to engage me in conversation for the first time. His eyes said save me. I do not think he was used to someone questioning him.

I just stretched out in my chair and placed my hands behind my head. I needed popcorn. I was thinking you two go ahead I am fine right here.

Well when the bell rang, and she went back to her corner, the doctor continued.

He explained that he was a cancer surgeon. That is how he made his living. He knows what cancer looks like. I would have used the duck analogy but he continued saying that if it looks like a dog and barks like a dog then it is a dog.

He said that his belief was that the cancer had spread into my bones. He knew that is not what I wanted to hear, but that was what had happened.

Based upon the scans and what he personally saw inside me he said that I had metastatic prostate cancer in my bones. He believed that the disease had spread into several of my ribs.

During the conversation I then learned that he had taken my entire fourth rib. I thought that he only scooped out pieces. He said that the entire rib was diseased and he took it.

Now I thought that he had cut it out. But no, he explained that they have a special pair of pliers and that he just broke off pieces of the rib with the pliers until he had it all.

He then spoke about how he felt that I should have another surgery and that he should take the ribs from my right side that showed possible tumors and have them sent to the pathologist.

This was the surgery that I did not want. This was where several ribs would be taken and he would replace them with some sort of fake rib.

Christy was about to come out of the corner for the next round. I sensed that he felt another ass kicking coming and he pulled out his cell phone and had my oncologist on the phone in a matter of seconds. How did he do that?

He told Dr. O that he had Mr. Brown with him discussing the test results. I heard Dr. O say “Kevin.” It is good that your doctor knows who you are, but it probably is not that good. I sensed that they had already talked about my need for another surgery. Dr. O agreed with the surgeon that I should have the second surgery. They got off the phone.

The doctor continued with his passionate case that I needed the surgery. I gave in. I agreed to the surgery.

We left with the agreement that his people would call my people to set this whole thing up.

Walking to the car Christy made the comment that the doctor at first was ignoring me and only talking to her. I said that he only started talking to me when he became scared of her. I know exactly how that doctor felt.

That was on Monday. On Wednesday the surgeon tracked Christy down in her lab. He told her that he had been talking with several doctors familiar with my case and he had decided that he would rather again operate on my left chest area. That was still the area they were most concerned with. He no longer wanted to operate on the right side.

Once I received that news I called the doctor’s office. I spoke to the lady that does the surgery scheduling. I informed her that any surgery on my body was now cancelled.

He had convinced me that the right side needed attention, and then he changed his mind. What the hell was going on? Enough of this bullshit!! No surgery!

So let’s review what we have so far:

CT Scans and Bone Scans show the disease has moved into my rib bones.

Surgeon: He saw the dog and it was not a little dog, but a big cancer dog.

Pathologists: Well we found no dog.

Oncologist: He still does not want to commit at this time. Great! He is probably a cat person.

Urologist: He is not aware of what has been happening. It is time to pay him a visit.

I credit Dr. U with saving my life. He correctly diagnosed me when Dick did not and performed the cancer surgery.

When this all started, I went to see him for a second opinion and when we met he did a DRE that sent me to the ceiling. I had never had an exam like that. I thought that this meant we were getting married. Put a ring on it doc. I later lay on the exam table waiting on my cigarette. He then told me that I was in very bad shape and needed surgery NOW.

He told me that my cancer had spread out of the gland and that he was very concerned for my welfare.

Dr. U is a little older than I am and much older than my other doctors. He is my Wise Old School Doctor. We get along most of the time. He has gotten a little irritated when I have chosen to follow other doctor’s advice and not his. Still we’re good.

I had lab work done before seeing Dr. U and so the first thing we did when we met was go over the labs.

He gave me great news. He said that my PSA number was zero. He thought that I would never see my PSA drop to zero, but it had. Fist bump time.

Many times I have written about my lab numbers, but I have never explained what they are looking for. They check for several different things, but the main number they are concerned with is the PSA number which stands for Prostate Specific Antigen. A normal prostate will produce this PSA protein. Cancer will also produce PSA. So when you have surgery and have the prostate removed you should no longer have the PSA protein in your blood. If you do, it is a sign that malignant cancer cells have escaped the gland and are producing PSA on their own. I had a very high PSA after surgery. After surgery it should be zero.

Now the number had dropped to zero due to my drug treatments. I am scheduled to go off treatment. I asked how long the PSA would stay at zero. I knew that this was not a question he could answer. I was testing him.

He said that it would be zero until it wasn’t. We both laughed.

No one knows how long the number will stay depressed. It could start going up very soon indicating that Brutus was once again growing and spreading. It could stay depressed for a year, and then return. The drugs have shrunk the tumors to undetectable levels at this time. The tumors are dormant. They are not dead. Brutus will grow again.

We were standing in an exam room when I asked the doctor what he thought of the biopsy results.  He pointed toward the chairs along the wall and said, “Kevin, have a seat.” Not good. He seldom calls me by my first name.

Dr. U does not like to be the bearer of bad news. He avoids it at all costs. His favorite way to avoid tough discussions is to say, “Let’s talk about that next time.” I have had to overcome that before and then turn into an interrogator to get information out of him.

We sat down and the conversation went like this. I will paraphrase. I had to pay attention. Christy was not there.

Doc: When we first met you were in very bad shape. Your PSA is zero today, but it will not stay there. You are not curable and the cancer will return. When it returns it will be in your bones.

Me: Say what doc!?

Doc: Every one is right. Your cancer has spread into your bones. The tests are correct. Your surgeon is correct. The pathologist is correct.

Me: Doc you are going to have to explain that to me.

Doc: The CT Scans and Bone Scans are showing where your bones are trying to heal from the cancer. Your surgeon saw the damage the cancer had caused. It is there. The pathologist could not find the cancer, but the cancer is there. They could not find it, because the drugs you are on have finally been able to get the upper hand and have shrunk the tumors. They have shrunk so small that they are not detectable to the pathology tests. Therefore, negative results from the test. The cancer is there in your ribs. I am sorry. We have drugs and they are coming up with new treatments all the time to help you survive.

The Wise Old Doc had seen this scenario before.

He told me that with hindsight he now believed that the cancer was in my bones before surgery. They were microscopic cancer cells and did not show up on tests. My pain is what has lead to the discovery of the spread of the disease.

His explanation made perfect sense. It definitely was not what I wanted to hear, but finally someone had made sense of what was going on inside my body.

We parted and before leaving the building I made another appointment to see him in a few weeks. At least I think I did. Things were a little foggy as I was leaving.

When I first started this treatment process dealing with the side effects of surgery, radiation, pills, and shots made me sick. The treatments were what made me sick not Brutus. All the complications I was dealing with were manmade.

Now things have changed. The pain I had been feeling in my ribs was caused by the cancer actually attacking my body. Brutus is trying to kill me from the inside.

This is devastating news. I have written about what this type of diagnosis would mean. I will not go over it again. I will just say that my prognosis is terrible, and I do not want to talk or think about it.

I purposely am posting this essay on the weekend so that the great people I work with can read it and adjust. Some might talk with each other. Some might text me. I know this will hit many of them just as hard as it has hit me. Well maybe not quite as hard as it hit me.

Cancer is chaos and I should not be surprised this has happened. It seems things change on a daily basis.

People will want to know what they can do for me. Right now I just need some space.

I am still trying to figure out what is next. It seems like I am on a never ending cycle of scans, blood work, shots, pills, doctor visits and picking up my dry cleaning. Cleaned, pressed and starched. You think I do that shit? Hell no.

Now if I could only figure out how to clean, press, and starch Brutus.

Kevin

Religion

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At work my detective partner is named Dave. I take Dave out in the field with me when I think I might get my ass shot off of someone’s porch when I knock. I realize that it might be nice to have a back-up at times or at least a witness to my demise.

Dave’s father is a retired minister. I would say that Dave is probably a little more religious than I. His office is next to mine and we have had some deep discussions at times. A few talks have been about religion or I should say my lack thereof.

With my current situation in mind Dave asked me one day if I ever prayed. I told Dave “No.” I have never in my life prayed for myself. Whether it was about cancer or anything else.

Now I guess I have to qualify that statement, because I think that there have been times in my youth that I have asked God to please make the bed stop spinning and if he could do that for me that I would never again do what I did last night. Also in my youth maybe I have said to God, “Please don’t let her be pregnant!” Maybe or maybe not, college was a good time. I do not think those wishes really qualify as prayer.

I have never asked God for a cure. I have never asked God to stop the pain. I have never asked God for strength. I have never asked God why. Why me? I have prayed for others, just not me. If someone wishes to pray for me I appreciate that very much. I appreciate everyone’s prayers, thoughts, and wishes. They keep me going.

Maybe I should ask God to kick our state legislators in the ass, and get them to increase funding for our schools so that some bright kid might one day discover a way to help people suffering from disease. Yes I might do that.

Some people when reading this will say, “Well Kevin if you prayed you would not be in the deep shit you are now.” Maybe they are right or maybe not. Maybe I will get the opportunity to meet God and when I do I am going to have one question for her: WTF!!

I do know how to pray. Hell I was born and raised Catholic. I went to Catholic grade school and I was an altar boy. I have been a recovering Catholic for about 40 years.

In Martinsburg Sister Mary Peter Damien was my teacher for 1st and 2nd grade. Both classes were in the same room. Sister Mary Black & Decker was the shop teacher. I know old joke, but I still laugh. You must remember that one of the reasons for this blog is to make me laugh, and laugh I will.

When older I would sometimes go to confession in Martinsburg, sometimes in Wellsville, other times in Mexico, MO. I had to try the different churches in order to learn which priest was the most lenient. You know, I needed to know how many Hail Mary’s I was going have to say if I had an affair with the lady next door. Hahaha.

Often I found myself in Mexico on a Saturday and my mother liked to go to confession at the church there. I did not like it there.

The church had more than one priest, and I learned quickly that if you told one of them that you had missed church one week that your penance was automatically going to be to say an entire Rosary. That was a lot praying. You would have thought that I did sleep with the neighbor’s wife. I thought that was a little harsh for missing mass.

The Church had two or three confessional booths. Cannot remember how many, but for this story we will say three. It was my task to try to figure out which confessional booth Rosary priest was hiding.

So I walk into the Church and I can hear Don Pardo yelling out, “Kevin do you want what is behind curtain #1, #2, or #3?” This was a big decision. I had no time for the Rosary. I had to find the right priest. Don would not let me phone a friend for help. I picked #2.

So I get in there and start, “Bless me Father for I have sinned. My last confession was……”

Then I hear the priest. Ooooh noooo. It is Rosary priest. So that day I decided to add another lie to my lie list and not mention having missed mass since my last confession. I was told to say a couple of Our Fathers and Hail Mary’s and I was out of there in time to get with my friends for a Saturday night party. You know us Catholics.

At college I went to the Newman Center (the Catholic church on campus) a few times. I decided that it was not for me.

Religion never really was an issue until Christy and I were in serious discussions about our relationship future. She was Methodist and she told me that she would not become Catholic or be married in the Catholic Church. Hell I did not care where we got married. I just wanted to have sex.

It did matter a bunch to my Irish Catholic grandparents. So I was able to get Christy to go and meet with a priest. We enrolled in education classes with the knowledge that she was trying to keep peace in the family. We went to class every week with other couples.

The priest made it a point to make sure that everyone abstained from sex before we were married. No problem. Well it wasn’t for awhile. Also the priest would sometimes ask.

You see we were living in separate apartments, but our leases were up one month before the wedding. We found a place and moved in together. This is where we would live after the wedding. Did I mention that it was just a month before the wedding?

I was walking behind Christy one day and she bent over to grab a can of corn. I do not know what happened, but it happened. I could not control myself and we had sex right there. Hopefully the priest would not ask.

So we are back in class a few days later and the priest he asks if we have been abstaining from sex. I guess I could have lied and added that to my tally at confession, but I told him the truth.

I told him that she had bent over for a can of corn and I could not control myself and we had sex right there.

The priest told me that we were no longer welcome into the Catholic Church. I said, “Father that is okay, because we were no longer welcome in Kroger either.”

Hahahaha. Gotcha.

Okay. Okay. That was supposed to be part of an April Fools post but April Fools was on Easter this year. Did not think that was a good time for this post.

Anyway most of what you have read here is very true. Some is not. You figure it out.

I am not trying to challenge anyone’s religious beliefs. I guess I am still on that road trying to figure out my own. Hope I have not pissed off too many friends and family, but at this stage of my life I guess it does not matter.

By the way we were married in the Methodist Church. Seven years and one great granddaughter later my grandmother got over it.

Seriously I am not sure of the existence of Heaven or Hell. I figure that when I die that I will either go to sleep and never, never wake up or wake up in Heaven. I really am not in any hurry to find out, but my money is on the former.

I am spiritual, but do not consider myself church religious. I see God when I see a couple sitting on a park bench holding hands. I see God when people do unselfish things for their fellow man. I see God in the eyes of my Camden. I am in no hurry to leave.

Several years ago I stopped going to church. It did not feel right. No matter how many times good intending people ask I have no plans to ever return.

I do not want to have a church funeral. I would rather have a big party in which I am the host. Video recorded of course. I will welcome everyone there and say sorry I could not be there, but I am dead.

I will have a recording of myself asking questions for a game of Dead Man Trivia. You know trivia questions about me. Questions like who is the world’s greatest band? One of the kids better get that one. I want everyone to have a good time.

Maybe I will see you there. Maybe not.

Kevin

“Heaven is under our feet as well as over our heads.”  Henry David Thoreau

Let’s Talk

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18

It has been a few weeks since my last essay and I have a lot to say.  This might be a long one.  Go ahead and have a seat or lie down on the couch.  Put your feet up and make yourself comfortable.  Here we go.  Let’s talk.

I stopped taking most of my medicines in December and I feel so, so, so, much better.  Not sure that was the best move, but it sure felt like it at the time.  The nausea and extreme headaches have gone. I have not hugged the trash can in my office for weeks.

So when you ask me how I am feeling the answer will be “good.”  Now you have to understand that my good and your good are different.  I will always be dealing with side effects from surgery, radiation, and medications.  I have stopped taking the oral medications, but will continue with hormone therapy for a few more months.

What I am saying is that your good will always be “gooder” than my good.  Is gooder a word?  Well it is now.

 

 

(Everyday is a good day with Cammy)

I look normal.  I look fine.  But I deal with things that you do not see.  I have good days, bad days, and ugly days.  Most often my days are a mixture of all three.  I can be walking along feeling fine and the pain hits.  That pain can literally knock me to the floor.  We are working on trying to solve the pain issue, but for now I have tabled all of their recommendations.  I guess you can say that I am taking their recommendations under advisement.

I mentioned that I was no longer taking any pills.  The goal of the meds I was taking was to shrink any existing tumors and to slow cancer cell growth.  The numbers showed that the poison I was taking was working, but not as well as had been hoped.  The fractional drop in the numbers we were seeing in my opinion did not justify the side effects I was going through.  The cost vs. benefits did not add up.  So I stopped.

Christy pointed out that I was taking the meds to decrease the probability that the cancer will kill me.  She fears that my numbers will soon start to go back up.  She is probably right.  She has the brains in the family.  I am the looker.  You know the eye candy.  Shut up Erin!  I know that I am probably the only one laughing, but laughing makes me feel good.

Christy worries.  I understand that.  I think she would like to see me stick around a while.  We have talked at great length about the future and all the uncertainties of life.  She knows that what is important to me is having more life in my years rather than adding more years to my life.

I want to live not just survive.  Constantly being sick is not living.  Christy has a front row seat to what is happening.  She is a witness to what I am going through.  She understands that quality of life is very important to me and that future decisions will be made with that being the most important goal.

When someone in your family gets cancer everyone gets cancer, especially your spouse.  I try to comfort Christy the best I can.  I often grab her by the shoulders and pull her close to me.  I look into her eyes and wipe away her tears.  I tell her that everything is going to be okay.

So where do we go from here?

Advanced prostate cancer is a progressive, and life shortening disease.  When I say advanced cancer I mean cancer that is not curable.

I like to look at it as a currently incurable disease.  I am hoping that sometime in the future that some smart researcher will find a cure.  I hope that will happen.  I suspect that it will not happen in my lifetime.  I think amazing advances will be made to help people and maybe even help me, but I do not think a cure will be found anytime soon.

I mentioned that I am currently on a hormone therapy treatment.  It is called androgen deprivation therapy.  (ADT)

Androgen deprivation therapy is often used when dealing with advanced prostate cancer.  Androgen hormones are what feed the prostate cancer.  Testosterone is an androgen hormone.  Lupron is used to reduce the amount of testosterone in my body.

You see or hear commercials about men with low T needing to take supplements or drugs to increase their testosterone levels to get them to feeling like a man again.  Well I not only have low T I have no T.  Yup zero.

A side effect of the Lupron that you can see is the weight gain.  The suppression of testosterone causes weight gain.  I was told to expect a 25% increase in body weight.  I went from 155 to 185.  Right now 175.  None of my suits fit.  I had to buy new clothes.  Damn.

I took one suit to my tailor.  I refuse to take all of them.  I hope to lose the weight eventually.  Hopefully when off the Lupron in April the testosterone will recover and the weight loss will be easier.

I have to deal with several nasty side effects due to no T.  One of them being hot flashes.  Ladies I feel your pain or should I say heat.

My office door is near a rear exit.  Sometimes the flashes are bad enough that I will walk outside in the nine-degree weather we have been experiencing to cool off.  It helps.  Next time I will try to remember my key card so I can get back inside.  I had to walk to the front entrance to get back into the building.   It was a long cold walk.  Where is a hot flash when you need one?

With no testosterone in my body the ratio with estrogen is out of balance which causes the hot flashes.  I want to start taking off clothes, but that is not an option at work.  It might be an option when shopping at Walmart.

Men can be such bitches.  When asked about my treatments I have tried to explain the hormone treatments.  I no longer do.  I got tired of the girly man jokes.  The next guy who makes a girly man joke is getting hit with my purse right upside their head.  Take that bitch.

My next Lupron shot is scheduled in April.  I am going to tell them no thanks.  I will then be off all drugs.  Then we will see what happens.  I am so looking forward to being completely off everything.

I will then be tested every few months to monitor the growth of the cancer and when it reaches a certain level I will be back on treatments.  When I return to the treatments I will be sick again.

I asked my urologist how long I would have to continue this cycle of on and off treatments.   He gave me his best “Squints” impression and told me “for-ev-er.”

I will be on this cycle of treatments for the rest of my life or until they stop working.  Some patients stay in this cycle for many years.  I call them superstar patients.  They do not get better, and it might get worse, but does not become terminal.

Advanced prostate cancer patients will never beat the disease, but if treatments are working the disease will not beat them either.  They will battle it to a draw and will die of something else.

This is where I am now and where I hope to stay.  But I have to deal with the reality of my specific disease characteristics, and the treatment options currently available.

Based upon my age and disease characteristics at some point treatments are most likely going to stop working for me, and my cancer will go from being incurable to terminal.

Hopefully this will be many years from now and maybe additional new treatment discoveries might extend my life.  Unfortunately no matter how much I hope I might not become that superstar patient.  The disease might progress faster than expected.

I have asked my doctors how long I have.  The only answer they will give is that it all depends on how I respond to future treatments.  If the past is an indicator of the future I could be fucked.

Most people will not leave this earth without having to deal with some sort of adversity.  This is mine.  It is what it is and we will deal with it.

Some people refer to what I am going through as my new normal.  To me the “new normal” is like the phrase “journey” or being called a “survivor.”  I do not agree with any of them, but if someone else is comforted by these words then they should use them.

To me this is anything but normal so I refuse to say this is my new normal.  I want to work to getting back to the old normal, but I know that is impossible.  This disease has taken so much from me.

I have been mutilated, burned, and poisoned.  More will be coming.  This is not normal.  My life has been forever changed.

People ask what they can do to help.  Others do not know what to say.

There is nothing at this time that you can do to help.  Let me take that back.  The one thing you can do to help is to stay in contact.  Talk with me.  I want so much to talk with you to find out how you are doing and what you have done in the past and what you plan for the future.  I want to hear all about your vacation and talk about your children and grandchildren.  That would make me smile.

We do not need to talk about my cancer.  This is what I have to deal with.  You do not need to deal with it as well.  If you want to ask some questions that is fine.  I will answer.

I do not want you to feel that you have to come up with some magic words too console me.  That is not needed.

I only ask for your presence, and your time.  I am not contagious.

That would help me in my attempt to live a normal or new normal life.

When I think about it I have become a different or new person.  A New Kev so to speak.  Old Kev still exists, but has become hard to find.

New Kev has taken over and Old Kev is not sure he likes that.  Old Kev likes some things about New Kev.  Other things he does not like.

When I find Old Kev I am going to tell him he no longer has to be angry.  Even though he has much to be angry about, the anger does not help. He needs to let the anger go.  I will tell him to smile more and enjoy life.

I would tell Old Kev that he has been strong, but that his constant vigilance has taken a toll on him physically and mentally.  I would tell him that it is time for him to stand down and to let New Kev carry the load.  I would tell him that New Kev has his back.   I would tell Old Kev that I know that he is scared, and that is okay.

I would tell him that Christy wishes he did not use the “F” word so much.

I would assure Old Kev that the fight was not over.

When I find old Kev I am going to grab him by his shoulders and pull him closer to me.  I am going to look into his eyes and tell him that everything is going to be okay.  That is the least I can do for him.

Some people say that everything happens for a reason.  Well fuck, fuck, fuck, that!!!!

Wow!!  I think I just found Old Kev.  Let’s Talk.

Kev

Introduction

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12

Let’s just address the reason for this blog right up front.  I have stage 4 prostate cancer.  They tell me that the cancer has advanced too far and is not curable, and that fucking sucks.

Let me explain my word choice.  You see if you are going to be a reader of this blog you will need to be sure that you have your big boy/girl panties on because I plan on using big boy words.  As for me I wear my big boy Depends.  Prostate surgery and incontinence you know.  That radiation did a hell of a number on me as well.  Fuckers!

Anyway I find that the F word can be used to help explain many things.  I use the word as a noun, verb, and adjective.  So you will probably see it from time to time.

Moving on:  Okay Kevin you have cancer, why the blog?

I am writing for a couple of reasons:  One I find it to be a form of therapy.  I talk to myself a lot and if you are a writer you get to answer.  The second reason is for my three children and grandson and any future grandchildren.

My kids are adults and have moved on with their lives.  My home will always be their home.  The job of a father is never over, but I do not have the influence nor do they need me like they once did.  And that is good.  With the kids we have memories that they will have for the rest of their lives.  If things turn ugly we have had our time together.

With Camden it is a different story.  Camden is my two-year-old grandson.  I love him more than I can ever explain.  My greatest fear in all of this cancer shit is that my time will come before he has had the opportunity to form lasting memories of our relationship.  I can only remember bits and pieces of when I was say five, six, seven, or eight years old.  I would imagine that his future memory of what was going on in his life at that age will be cloudy as well.

So I take videos with him as often as possible, and you will see those here and on Facebook.  I will use this blog to say things to him that maybe he will be able to look over in the future and smile.  I hope, I hope, I hope, that maybe something will happen to change things and Cammy and I will be able to sit down together and read over these pages years from now and laugh.  Unfortunately that is most likely not going to happen.  So these pages will be my branches that I am leaving behind for Cammy.

I read a story many years ago that stuck with me.  In that story a son was taking his mother up a mountain to die.  As he carried her up the mountain she would grab branches from the trees and drop them onto the forest floor.  The son asked her why she was doing that and she explained:  We are going up the mountain together, but you will be coming back down alone.  These branches are to help you find your way.

Maybe something I say here will help my family find their way in a world without me.  I hope that is not anytime soon.  But as I have always said you gotta be prepared for the worst and hope for the best.

You will be learning a lot about me here on these pages.  I will try to be as open as possible and that is really hard because that is not me.  I will be talking about my hopes and fears, and at times that might get uncomfortable for me or you.  If that turns out to be the case and you feel that I am providing TMI, I ask that you stop following the blog.

I hope to also help others with cancer. I will be talking about my treatments, doctors, and insurance companies.  I guess the entire medical establishment.

For those of you who decide to check in from time to time all I can say is strap on your seat-belts, you are in for a hell of a ride!

You will learn that another reason for the blog is just to get myself to laugh.  You might laugh along with me.  I will probable laugh harder, according to my kids.

So that is kind of an intro to what you will find here.  Oh I almost forgot.  I probably need to introduce myself in case someone finds their way to this page through a Google search because they also have cancer.  Welcome.

My name is Kevin Brown and I am 58 years old.  I am the father of three and husband of one.  I am a cancer patient and I will forever be a cancer patient.

Until next time keep on Living…Loving…Laughing.

-Kevin

“Time is shortening. But every day that I challenge this cancer and survive is a victory for me.”
-Ingrid Bergman

I’m Thankful For

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Around Thanksgiving through Christmas you see lists made by people describing what they are thankful for. In the past I have not really done much inner reflecting on what I am or should be thankful for. But I have found myself thinking about what all has happened this past year and realized that I have a lot to be thankful for this year. Not just during the holidays, but things that I need to be thankful for each and every day. So today I am going to talk about one of the things that I am thankful for.

Ice cream, yes ice cream; I am thankful for ice cream. You are probably thinking: What the hell Kevin, you started off with what seemed to be a serious topic and now you want to talk about ice cream. Bear with me. There is more.

Most kids like ice cream, right? I spent a lot of time with my kids eating ice cream at home, at the Dairy Queen, Braum’s, Jimmy’s Diner, Wendy’s, Baskin Robbins etc.

I remember being at a restaurant and they had put us in an area off by ourselves (smart people) except for one older couple we had the area all to ourselves.

We were having shakes and the kids decided that it would be fun to blow into the straws and watch the shake explode. We were having a good messy time. We laughed and laughed and were very loud. I noticed the couple watching us. I walked over to them and apologized for being so loud. The man said that they were not concerned about the noise. He and his wife said that they were just enjoying watching us have so much fun with the kids. I am thankful for ice cream.

My girls danced on their high school dance teams and after most football and basketball games we would end up at an ice cream store. No matter if I was with Erin or Amy we always had at least a couple of their friends. Their friends learned to love, no I should say like, no I should say tolerate, yes tolerate sports talk radio on our drives to the ice cream store. When I see McKenzie, one of Amy’s high school friends, we still talk about listening to sports talk radio.

Once at the store we would have our ice cream often with what I called victory sprinkles. You know the little candies you put on top of ice cream after a win or even after a loss. No matter the outcome we deserved victory sprinkles. We would talk and laugh. I learned a lot about what was going on in my girls’ lives while at the ice cream store. I am thankful for ice cream.

Erin and I enjoying some victory sprinkles

I coached or helped coach many of Justin’s sports teams. We too spent a lot of time in ice cream stores. Frosty’s at Wendy’s were normally our first choice. There we would talk about the game, and at times I was able to crack his armor and we would discuss life. The ice cream helped break the ice so to speak. I am thankful for ice cream.

When they moved away and started attending that school that shall not be named I eventually got over it. I started enjoying going to Lawrence for visits and exploring Mass Street. There we go to Free State Brewery and have a meal and of course a beer or two. We then head to Sylas & Maddy’s for some great ice cream.

This year the kids have been coming home maybe a little more than in the past. They have been coming home to spend more time with me. Things have not gone as hoped in my cancer treatments.

When they are home they normally find a well stocked freezer of ice cream. A lot of fun conversations as well as serious conversations started this year while having a bowl of ice cream.

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Amy and I on an ice cream run. Shoutout to Chance for helping us pick out the best ones! — Harps in Bentonville, AR, 2012

This Thanksgiving we were at Erin’s house. They bought their first home this year and moved from Overland Park to Olathe. I do not know the Olathe area as well yet, but while driving around exploring I found a Dairy Queen in the neighborhood. That is all Cammy and I need.

The family will all be together in Wichita the weekend of December 16th. I am sure the topic of my heath will come up and I will update them on how things have been going and what are my next options. I will be reporting on the conversation I had with my oncologist during my appointment on the 14th. Once again not the best news, but could be worse. I am going to need some ice cream. Maybe even a few beers.

It will go something like this. The kids will go to their mom first to talk about how I am doing, and what kind of mood they should expect when they corner me. They will formulate a plan on when and how to approach me. Or Erin will just come out and say, “Well dad WTF is going on?”

I taught her well.

When they come to me I better have the same report as mom or I will be in trouble. I will be accused of holding back information. They have ways of making me talk. It usually involves ice cream.

So sometime during our visit I am sure that I will be taking them to an ice cream store.   I am thinking Cold Stone. I will order my two scoops in a bowl, and with the HOPE for a better future I will ask the server to add a few victory sprinkles.

Take… that… cancer.

Yes I am thankful for ice cream.

Kevin
Optimist
Pessimist
Trying to live in reality
MIZ

The Dance

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“To dance, put your hand on your heart and listen to the sound of your soul.”
~Eugene Louis Faccuito

Dancing has always been a big part of my girls’ lives. Both Erin and Amy were dancing around the age of four. By the time they reached softball age I could not rehabilitate them and turn them into ball players. Amy was busy picking dandelions in the outfield, and when she wore the catcher’s gear she could not walk, but my how cute she looked. Erin caught the ball with her mouth one too many times, and decided softball was not her thing. Their mom had won. Dancers are what they would be.

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I have loved watching them grow into beautiful, graceful dancers.   I was eventually fine that dancing was the athletic endeavor they chose, and I have always said that they get their dance ability from me. I have always loved to dance myself and have been known to break out a few moves now and then.

Dance became a part of my life as well as theirs. I enjoy dancing wherever and whenever I can. Weather that be in a class, such as my adult tap class, at a wedding, going out with friends, or just in my basement. I have found dancing to be very uplifting.

You lose yourself in the music. You listen to the keyboard, the drums, the guitar, and the music will enter your body and capture your soul. Then you move. Then you dance. This is when I forget that I am sick.

There is also another kind of dance that I am very familiar with as well. It is what I will call dancing around a subject. It is kind of like when I am interviewing someone and they ask me if they are going to jail. I may have known they were going to jail the minute they showed up to my office, but am not ready to tell them…ball change. Or I might not really know yet if they are going to jail and need more info from them to really answer that question. The dance continues…shuffle…hop…flap…ball change.

Then there is the dance of my medical team. It can be hard sometimes to get a straight answer. Sometimes I have to lead other times follow, which brings me to the call I received from my doctor’s office about my lab results several weeks ago.

A Tuesday afternoon I was in an interview when I saw my phone light up and that the call was from my doctor’s office. I knew that the call was about my lab results. On the voice mail Teresa asked me to call.

Surgery and radiation are the curative treatments for my cancer and I have had both, and I am on a lot of drugs. It had now been over two months since my radiation treatments ended. So at this stage of my treatments they should not find any evidence of disease. Any other news would be bad.

I called back around 4:00 and Teresa gave me the numbers. I was not disease free. The dance began.

She then talked about how much the numbers had improved and how things would hopefully get better. I wondered if she knew the significance of what she was telling me. Did she realize that the information she had just given me told me that my cancer was not curable? Was she deflecting my questions because the answers I was seeking should come from my doctor?

She was continuing to talk as positively as she could, but I was no longer listening. My mind was somewhere else. I thanked her for the information and I hung up the phone and I thought ‘Oh no Mr. Bill.’ (Kids you will have to Google Mr. Bill SNL)

I then cleaned off my desk, turned off my computer, locked my office door and told my partner next door that I was leaving early for the day. I then left the building.

As I drove away I had many thoughts. I thought about our trip in March to see a cancer specialist in Illinois. This was after surgery when they told me that the disease had spread, but they were not sure where it had gone. I needed a special scan and the machine was only in a few hospitals in the country. We tried Mayo in Minnesota, but they could not get me in for a few months. We did not have the time to wait. A cancer hospital in Texas wanted me to commit to having my treatments at their hospital. I said no. We were able to find a hospital in Illinois with the machine and we traveled there.

The scans revealed that the cancer had spread to several lymph nodes in my pelvic region. They also noted concerns for the cancer having reached lymph nodes outside my pelvic area and into my stomach. The radiation oncologist wrote in his report that several of the lymph nodes were highly suspicious for metastatic disease, which would mean incurable. I did not want to think about that.

The scan was able to tell us where my radiation treatments should be concentrated with the hope that it would kill the cancer and cure me.

I also thought about the day I met with my current surgeon for a second opinion before surgery. I remember the doctor examining me and he told me that I was not stage 1 as I had been told by the other doctor who I fired. Rather I was at least stage 3 or worse. He looked at me and said that he had great concern for my welfare.

I knew when he told me stage 3 that it was very hard to cure stage 3 prostate cancer.

So what I learned from Teresa that day really was not surprising. Actually in the back of my mind it was expected.

The lab results told me that any future treatments would not concentrate on curing me but rather on prolonging my life. To give me more time, to help me hopefully into remission. Hopefully the disease will be treatable and manageable. Time will tell.

I have not really shared the information you have just read with many people. I have become a very private person over the years. I am very protective of my family’s privacy. I think it is because of the job that I do. Hell I do not even have a goddamn Facebook page. (Until a few hours ago. Erin set me up. Have to see how that works out.)

I find it very odd and scary that I am sharing my experience with so many people now, and in this manner. But I have found that putting my feelings in writing has helped me deal with what is happening and allows me to think deeper about this process. I guess if I am going to write it then someone ought to read it.

When you read this please do not feel sorry or sad for me. I do not need or want sympathy. What I need is to feel your positive thoughts and love. When I see you I want to see a smile and I will take a hug. I need more smiles and hugs.

I do not know what the future holds, but I do know this:

I WILL NOT ALLOW FEAR AND DEPRESSION TO TAKE OVER MY LIFE. WE WILL GET UP EACH AND EVERY DAY AND MAKE IT THE BEST DAMN DAY POSSIBLE. THAT I PROMISE. I AM SORry for yelling. I have calmed down now.

And by the way if anyone ever asks you what Papa Brown did after he left his office that day he got those shitty lab results you can tell them that I went out and did what I do most Tuesday nights — I went dancing.

Kevin
Optimist
Pessimist
Trying to live in reality

MIZ

I’m Ready

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‘I’m Ready’, that was the name of the song that Pandora decided to play during my usual morning workout. It was sandwiched between a Linkin Park song and one by Breaking Benjamin, which are my normal morning pump up jams.

 

Why did Pandora pick a song by Nikyee Heaton? A woman I have never heard of nor have I knowingly listened to her music.

 

But instead of changing the song I wiped the sweat from my forehead and found myself listening to the words. I tried to figure out why Pandora had chosen this song for me.

Did Pandora know that I have stage 4 cancer? Did Pandora know that prior to turning on the music for my workout I had been in the bathroom vomiting?

 

Not sure if my morning nausea is caused by my medications or from stress. I guess it does not matter.

 

Did Pandora know that after my surgery my post op tests were bad? I was told that the surgery was not as successful as hoped and later scans showed that the disease had spread. I would need radiation and drug treatments.

 

Did Pandora know that my radiation treatments were over and that today I was going to my doctor’s office for post radiation testing? Did Pandora understand the anxiety I had been feeling the last few days? Did Pandora realize that I was not sure if I was ready to deal with cancer today?

 

I do not know what Pandora knew, but I do know that song she chose for me was about resilience, and that was something I needed more of that morning.

 

I listened to the words, but what caught most of my attention was the song title on the TV screen. I’m Ready. But was I? It was as if Pandora was challenging me to get ready to face this disease another day. Challenge accepted!

 

I started moving faster on my elliptical, pumped out more pushups, and threw around that 100 pound dumbbell with more gusto. Okay take away 90 pounds from the dumbbell. Once finished it was time for a shower and then a drive to the other side of town for my test.

 

When I arrived at my doctor’s office that morning I spoke to Teresa. Teresa would be taking my blood sample and we talked about the results of my last test as well as the many different treatments I have had since. We talked about how those treatments and the drug therapies would hopefully have a positive impact on today’s test. We spoke about the type of results we might expect.

 

I talked to Teresa about the anxiety I had been feeling the last several days. But at that moment — as I sat in the chair waiting on her to take my sample a calmness came over me that I had not felt in some time. I felt peace.

 

I knew that no matter what the results, we had plan A, B, and if needed C. We hoped for the best, but knew we could deal with the worst.

 

Teresa paused before putting the needle into my arm. We looked at each other and I said, “I’m ready.”

 

Kevin
Optimist
Pessimist
Trying to live in reality
MIZ